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AML with Cognitive Decline: At a loss of what to do for my father
Hi. I'm new here and was introduced to this support group in December 2024 when my dad was in the hospital.
My dad will be 83 soon and was recently diagnosed with AML in December 2024. He needed immediate admission to the hospital to begin treatment. His inpatient treatment was complicated with a mild heart attack and pseudo gout among other things. His treatment is Decitebine and Ventecloax.
My dad was discharged in January after being in the hospital just shy of a month. Since then, he has had completed Cycle 2 as an outpatient. He was to start Cycle 3 this week but had some unexpected developments that required a short admission to the hospital - again. I just brought him home yesterday.
If the diagnosis isn't enough, he also has significant cognitive decline. That had started prior to the diagnosis, but is definitely more apparent since December.
I am the youngest of two in our family and the sole caregiver. My mom is still living but isn't cognitively strong to help, especially given the many health issues my dad has.
I'm desperately struggling to find help and support as I am exhausted. I live an hour and half from them. They live independently so I have to be down to their place A LOT.
He cannot connect how serious AML is and when with doctors, he hears one word in the conversation and creates his own reality. This week, it's "The doctor said I don't need to do chemo anymore. I just need to take a pill now because the doctor thinks it's at bay."
Just. So. Tired. I'm trying to do all the things and I'm exhausted. I've tried to talk about getting help but I keep getting dismissed.
Sorry this got so long!
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Hi 😊 I'm new here and am grateful to have been introduced to this support platform. I feel like my situation can cross over to a few threads in Mayo Connect!
I'm the youngest of two in our family and the sole caregiver of both my parents. My dad, especially, has needed hands on help. He will be 83 soon and started having odd health issues in 2024 and was diagnosed with AML (Leukemia) in December 2024. My dad spent just shy of of a month as an inpatient receiving treatment. It didn't go well and was complicated by numerous things, one being a mild heart attack.
He has had some cognitive decline prior to the diagnosis but since starting treatment, it has been even more apparent.
Without making this a book (!!), I'm desperately seeking support and suggestions on how to get my dad's care team on board with his current status. I've emailed his PCP a few times and have tried to verbally share without being "the bad guy" but nothing is said or implemented.
I feel sorely unsupported that way. My dad cannot connect with his health issues and I'm frustrated that the care teams continue to discuss issues with him using medical terminology that he does not understand. I've started interrupting doctors to ask them to use lay person terms.
I need help. Desperately. I simply cannot keep managing everything alone. And, talk about caregiver guilt admitting that. Whew! Thank you for "listening."
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13 ReactionsHello. My heart goes out to you and your family. First off do you have DPOA and the necessary ability to stay connected with the physicians. I would keep a diary of every call , text and their response. Once your dealing with more cognitive issues..Burnout can happen slowly or quickly! My spouse deals with multiple problem's. Parkinson is the main problem which has led to many other conditions. This site is very helpful. You are welcome to speak with with thru text. If I told our story it would probably astound you. Take care of yourself. ❤️
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9 ReactionsWelcome to the site. I’m sorry to read about your father.
I sure can relate to your situation, as mine is similar. I am the sole caregiver for both my parents who are 88 and 84. My mom is currently in the hospital and I’m managing my dad’s care solo, while working too.
If he is cognitively not able to understand the care and treatment discussion, can’t they discuss it with you? Are you his Healthcare POA? Does his Living Will address what treatment options he wanted in this kind of situation? No reason not to just interrupt the doctor and say explain that please. They realize his age and cognitive decline, right?
My parents are ready for palliative care at this point and possibly Hospice. My dad has CHF, CKD and ALZ. My mom is no longer mobile.
It sounds like you are doing a great job. It’s very stressful and lonely. I’m fortunate in that I don’t feel guilty at all. I do my best and think it’s a good thing. I need help too! I just retained the services of an agency that will stay with Daddy while I’m out. Another home health care aid comes to do cleaning, changing linens, etc, twice a week. He’s supposed to help with personal care, but ……maybe, later. Will your dad accept help?
Have you considered respite care? It’s been difficult to find. Wishing you all the best! Are you in the US?
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8 ReactionsI’m so sorry you’re going through this. I would reach out to his doctor and let them know you have noticed these changes in your dad’s mental status, as well as his struggles to manage his treatment and his self- care. There should be a social worker who can help get him some practical help. It may be just short - term but sounds like he has become unable to manage currently. He may be in denial or just hiding his struggles.
Can you discuss them moving closer to you? Bringing in part- time help. Do they want to “age in place”?
His illness can be the prompt for a discussion about those questions.
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2 ReactionsGood evening, Susan. I can just imagine how you might be feeling. I’m so glad that you found MayoClinicConnect! All of the members will be glad to help you.
There are several things you need to do: 1. Find out if your parents have a “medical durable power of attorney” . You may have to go through some of their papers. The PCP may have a copy in his chart in the office. If you can’t find it, call the hospital unit where he was and speak to the social worker. They should be able to help set one up. This MDPOA gives you the power to answer for him when he can’t, to say ‘yes’ or ‘no’ to treatments, and to speak with his care team. Send a copy to every member of the care team and state that you would like all further discussions to go through you because of your dad’s cognitive decline. You want to be the team leader for your dad, to do what is best for him, and what will keep him comfortable. You will find yourself becoming assertive. That’s OK because it’s for your dad. I know you can do this! You will be surprised at the power hidden inside you!
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9 ReactionsI agree with all the comments and send warm thoughts and hugs your way. One suggestion if you are not financially challenged is to engage a Geriatric Care Manager or GCM to help you sort out all that you need to do. A GCM can do as little or as much as you need from filling pill boxes to going to doctor’s appointments to finding an assisted living placement. You can find a GCM in your area at a manageable distance from you by going to the website of the GCM licensing organization, Aging Life Care Association at https://www.aginglifecare.org/ Click on the box in the upper right hand corner and simply enter your zip code and a distance. Even if you don’t have much money to spend, you can engage a GCM just to help you get off the ground with all that you need to do and then you can take over. For an excellent overview of what a GCM can do for you, I recommend the 30 minute interview on the homepage of my GCM agency, https://www.peaceagingcare.com/ GOOD LUCK!
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12 ReactionsWith all the current news on semaglutides for cognitive decline, has anyone tried that while also battling MDS/AML? I am also worried about a loved one that may/should undergo a bone marrow transplant, but that may be deferred indefinitely due to the cognitive issues. If semaglutides would work somewhat, maybe that would buy time for a transplant in the future. I don't know if 83, like your dad is, is too old for semaglutides.
Thank you. I call the facilities and leave messages, but no one returns the calls! It’s bizarre. I will explore the GCM.
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2 ReactionsGood luck! Please private message me if you would like more details on GCMs, what to look for in choosing one, etc., etc. Hopefully there will be plenty to choose from in your area.
Two general pieces of advice: since your Dad has complicated medical issues, I would recommend a GCM who has a nursing degree. And, if possible, I would choose a GCM who works in concert with at least one other professional or is part of an agency so that if your chosen GCM is unavailable for whatever reason, you have back-up from another GCM who will be familiar with your Dad’s issues.
Hang in there! I know it must seem overwhelming. But you have taken good first steps in getting your Dad the care that he needs. You do NOT have to do this all by yourself.
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5 ReactionsGood points. I will PM you.
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